Heart Damage from Chemo

[Jill Kreitman]

I have been reading this forum and have found it very imformative and comforting. What a journey. I am 42 and a single mom of a 6 year old. I went 5 years with out NED and have now metastacized to my spine. I am in Arizona, and have always had a very positive attitude. I feel God may be in charge but he gave me a will and I am not going, checking out is not an option as I have a daughter to raise. I know many of you do too and our kids need us.

Here is problem. I started Herceptin (have had 3 treatments). My inititial Mugascan came out low and saw cardiologist last week. He said my heart was damaged by A/C 5 years ago and I would probably have to stop Herception although he will leave that up to me and my oncologist. (if your title ends in ologist either me or my daughter have probably seen you). I go Thursday to see both doctors, in the morning for a stress test and echogram and in afternoon to met with my oncologist and supposingly to get Herceptin.

I am a little panicked for first time. If I can't take Herceptin, then what? Also I am having numbing in my fingers and tingling, wondering if that is a side effect of heart or Herceptin. I did start Coenzyme Q10 a few days ago. Any suggestions out there, I know Herceptin is best bet what do you guys think?

At 42 they say I have metastatic cancer, emphysema and now a damaged heart. It is all so surreal because I feel fabulous. I have to beat this.

Any imput is appreciated. Love and hugs to all who are touched by this journey in your life. Count the blessing of being able to see the beauty in life, the little things someone who has never been through something like this takes for granted. In some ways we are so lucky that the little annoyances in life don't matter. I don't know about you but I would rather get my luck a little easier way next time.

Jill

[Jill Kreitman]

By the way if given tbe choice I am thinking that Herceptin is more important tban heart. I told Cardiologist this and he said dead is dead. I don't think that was a very positive response. What do you guys think?

Thanks,

Jill

[Fontaine]

I think he's right, although he may have said it in a way that didn't upset you. But the way he did was simply straight talk. Remember that more women die of heart failure than of breast cancer so it's a legitimate concern.

I'm in the same boat as you. My heart was weakened from A/C 3 /2 years ago. My MUGA was borderline so my oncologist is letting me do Herceptin with Taxotere and Cytoxin but with careful heart monitoring.

I've been taking a course in alternative medicine this quarter and have been doing a lot of research. There are alternative things to do to "beef up" your heart to mitigate the effects of the toxicity of Herceptin (plus the others). Many of them are dietary changes combined with supplements and exercise. Just google "alternative medicine" (or "CAM") "women," and "heart" and related terms and stuff should turn up.

Personally, I think that's the way to go rather than altogether foregoing Herceptin. Also, I think there are some heart medications that may help prevent damage but I haven't investigated that much yet.

I'm writing a paper on CAM medicine and breast cancer and if I run across the info I saw before, will let you know.

[*_Linda in Calif._*]

Hey Jill: I also had heart damage but it was from the Herceptin. My Onc. took me off of Herceptin and my heart repaired itself within 8 weeks and was back to normal (this was with no medications of any kind, just rest from the Herceptin). Unfortunately, he then wouldn't let me start it again. I am at Stage III so I am in better shape than you are but can't get Herceptin covered by my insurance until I am at Stage IV. Luckily, I have been NED the last 2 years. I guess I would recommend taking the CoQ-10 (many of the people at this site swear by it) and if your Onc insists on stopping the Herceptin ask for a MUGA scan in a couple of months to see if, with a little rest from the Herceptin, your heart was able to repair itself so you could start it again. Best of Luck, Linda in Calif.

[Kathy]

Hi Jill,
I don't have cardiac damage but my oncologist said he would treat the cardiac situation rather than stop the Herceptin if necessary.
Kathy

[Jill Kreitman]

Thanks for taking the time to respond to me guys. I am hoping he will let me continue Herceptin and I will definately have f/u muga. I go tomorrow to Cardiologist and Oncologist. Wish me luck. I have a great doctor so I feel good about that. I am going to ask him about trials especially that one drug (starts with a P-i will write down before I go), but it is the drug they are saying may rival Herceptin one day. I don;t know if it is hard on heart also.

Anyways, thanks again and to everyone have a spetacular day!

Jill

[Lolly]

Jill, earlier this year there were some posts from a member regarding her experience with lowered ejection fraction; she was in a Hercepti trial and rather than drop out of the trial she saw a cardiologist and was given meds to support her cardiac function while she finished the trial. I've copied the posts and pasted them below for your reference, you might discuss this option with your onc, that you see a good cardiologist and get an opinion on support therapy, as clearly it was successful in this case.
Hope this helps, Lolly.



" Hi Carolyn and everyone. I've posted before that when my ejection fraction was falling and I was frightened I'd be kicked out of the clinical trial I was in, I immediately went to a cardiologist. He put me on an ACE inhibitor (accupril) and an Alpha-Beta blocker (coreg). Both drugs were OK'd by the trial folks. These helped my weakened heart and also kept my blood pressure, which had been rising, at a great level. I believe this treatment enabled me to finish out the trial. Next month I will begin weaning off of the meds.

Why is it that I don't hear about more women using this option when they are in danger of having to stop their Herceptin? I am really very curious. Is there some danger I'm not aware of to using this plan of action?

Susan"



" Hi Jen,

My suggestion is to see a cardiologist and ask about going on an ACE inhibitor and an Alpha-Beta blocker. This combination is what helped me to finish out my year of Herceptin. It supports weakened hearts, helps the pumping action and controls the blood pressure.

I'm stage IIIa as well and received the herceptin thru a trial. The trial folks OK'd this treatment. If you're getting your herceptin "off label" that's probably why she's reluctant to put you back on. Ask her what she thinks about this therapy (what was your Ejection Fraction score anyway?). This month I will begin weaning off the meds since I finished the herceptin last July.

I wish you well,
Susan "

[al from canada]

Hi Jill,

I am one of those who strongly advocates CoQ10. Also, Lolly make the same point as I was going to make: don't let an oncologist treat a heart problem. In this day and age, unless the situation is very severe, there should be no reason why your heart can't be stenthened while remaining on herceptin.

Good luck,
Al